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Positive Approaches Journal - Volume 2 Title

Volume 11 ► Issue 4 ► February 2023



The Importance of Advocacy at State Mental Hospitals

Laurie Barnett Levine MSW, LSW



Mental health advocacy has existed for decades, even  centuries. As long as there has been mental illness, individuals who experienced the illness have been misunderstood and locked away from society. In order to understand the importance of advocacy today, we must understand the history of advocacy and the stigmatization of those with mental illness.

The word “bedlam” that we use today to mean uproar, pandemonium and confusion  came from the name of a hospital in London in the 1400s. The hospital, Saint Mary of Bethlehem, was devoted to treating the mentally ill.

According to the National Association for Rights Protection and Advocacy, “mental patients had been subject to torture which included being shackled to walls, put in tanks of ice water, strapped to chairs, over medicated, and even given forced lobotomies.”1 Society did not understand mental illness or the functions of the brain so individuals who had a mental illness were locked away in terrible conditions in what were called insane asylums. 

Mental Health America, a national organization with whom my agency is affiliated, was established in 1909 by Clifford W. Beers who had been a patient in mental hospitals. He witnessed and was subjected to horrible abuse which spurred  his advocacy and the founding of Mental Health America, the nation’s leading community-based nonprofit dedicated to addressing the needs of those living with mental illness. Clifford Beers wrote the book A Mind That Found Itself.2 At the Mental Health America national headquarters there is a bell the size of a smaller liberty bell that was formed out of shackles that bound mental patients. This bell is rung annually at the national annual meeting and has become part of the logo of that organization.

We have come a long way from the 1400s, 1800s, and 1900s, but we have a long way to go. The word “advocacy” means speaking for another. Advocates today do not speak for the individual. Instead, they help individuals to have a voice. Advocates in the early days were mostly ex-mental patients who sometimes called themselves ex-inmates. These are people who moved from being victims to activists.

In the 1970s, the federal government, through what was then the National Institute of Mental Health, gave grants to the states to involve individuals who had been receiving care to become involved with policy and program development. This began the consumer movement. There are many terms that are used today to define these advocates, the individuals with lived experience. Terms used include Peers, Individuals with Lived Experience, Consumer, Patient Advocate. These individuals are invaluable in the advocacy movement because they stand as a living, breathing example of help, hope and recovery. Today the peer movement is very strong, and peers function as part of the treatment team.

It is now understood that many individuals who have a mental illness can live full, productive, happy, and healthy lives. Individuals may need supports in state mental hospitals when there are no other options, and they require further treatment and additional services to meet their needs. People with mental illness are treated in the least restrictive environment. Mental hospitals are closing beds, and in some cases the hospitals themselves are closing. Individuals who are “patients” are transitioned into the community.

This discussion is a brief synopsis of a very important movement and evolution in treatment and best practices. This is by no means to diminish the role that advocacy has played and the advancements in treatment that have been made. We are constantly learning about the brain and research is steadily continuing. Medications are being invented that improve outcomes and systems of care are improving.

The stigmatization of those with mental illness has not been eradicated and there is much ignorance and misunderstanding concerning individuals with mental illness. There continues to be much shame and blame. This can present many challenges as individuals transition from hospitalization to the community.

There are many challenges that occur when transitioning individuals from the state hospital to the community. The community mental health system has long been underfunded. This  results in waiting lists for services, low staff salaries and often not a full complement of services. There is currently often a shortage of programs to send individuals to after hospitalization. This has been exacerbated by the COVID-19 pandemic, which created an increased need for services and a serious shortage of workers. Services have had to be curtailed and, in some cases, programs have had to close, or implementation stalled.

It is understood that an individual’s basic needs must be met in order to be successful in living in the community. The concept of Social Determinants of Health (SOD) has emerged and fulfilling as many of these SODs as possible is considered to be a best practice. According to the World Health Organization, “these are non-medical factors that influence health outcomes. They are conditions in which people are born, grow, work, live, and age, and the wider conditions of daily life.” Examples of the social determinants of health are education, housing, income, food security, and education. As we move forward with advocacy at hospitals, we must make sure that individuals that transition from the hospital to the community have provisions for their SOD. Research has shown that meeting these needs is as important, if not more important, than healthcare. If you do not have a safe place to live, with food to eat, it is very difficult, if not impossible, to focus on your mental health.

There are many positive advocacy endeavors that exist at the hospital in order to assist individuals in transitioning to the community. Hospital discharge discussions can be very stressful and is a big change in the person’s life. One of the important efforts is to teach people in the hospital about self-advocacy. According to Mary Ellen Copeland, “the number one reason for developing self-advocacy is that you are the only person who has to live your life.”1

Advocates have met with state hospital patients and reviewed a self-advocacy curriculum. The advocate, the patient, and hospital staff work together to develop a realistic discharge plan and access community resources. Preparation for discharge must begin while the individual is in the hospital so that the social determinants can be in place and the individual can seamlessly transition to the community.

Peers have also become involved in assisting individuals in being ready for discharge. They offer inspiration and support in what can be a very anxiety producing situation. The person being discharged must be a part of the planning process for discharge. As Copeland states, “it is their life after all.”1

We have made many strides from the days when patients were shackled. We must continue to learn about what assists individuals to transition successfully to the community, apply best practices, to nurture resiliency and to achieve recovery and improve wellness. The hospital advocates have an important role in this transition process, helping to achieve a successful hospital discharge.



References 

1. Copeland, M.E. The National Mental Health Consumers’ Self-help Clearinghouse. “Self-Advocacy.” https://www.mhselfhelp.org/. Accessed February 6, 2023.

2. Beers, C.W. A Mind That Found Itself: A Memoir of Madness and Recovery. Waking Lion Press; 2008.



Biography

Laurie Barnett Levine is the Chief Executive Officer of Mental Health America of Southwestern PA. She holds a master’s degree in Social Work from the University of Pittsburgh and is a licensed social worker. Laurie has been a passionate advocate working to improve the lives of those impacted by mental illness. She has spent decades working in the behavioral health field promoting recovery, early detection, education, and quality services and programs for those with mental health issues. Laurie has supported the education of mental health professionals by working as a field instructor and adjunct professor for several colleges and universities. Laurie is a member of the Public Policy Committee of Mental Health America national, serves on the Public Policy Committee of the Greater Pittsburgh Nonprofit Partnership, President Elect of the Mental Health Association in PA, Allegheny County Mental Health, and Intellectual Disabilities Advisory Committee member and is Vice Chair of the Ray of Hope Suicide Awareness and Prevention Task Force of Westmoreland County.


Contact Information

Laurie Barnett Levine

Mental Health America of Southwestern PA

Chief Executive Officer

lblevine@mhaswpa.org